Co-Author of DIVIDED MINDS: Twin Sisters and Their Journey Through Schizophrenia (St Martins Press, 2005) and award-winning poet (WE MAD CLIMB SHAKY LADDERS:POEMS coming Mar 2009) Pamela Spiro Wagner writes about schizophrenia, shares her poetry and artwork, comments on life and relates the ups and downs of her daily struggles with mental illness. You can reach her at pamwagg217@gmail.com For more about Pam click: [articles and poems ] HealthCentral Top Site Award Winner!

March 05, 2007

Anorexia, or just no appetite?

I write this entries with all due respect especially to Kate and Paula, who have gone to so much trouble to help me and plead the case for my having an eating disorder. I really appreciate your loving encouragement and your loyalty and your inestimable kindness and continued concern, you two. But I must beg to differ: I may be damned if I do and damned if I don't (see last in first list of symptoms) but I do not, emphatically do not, believe I have anorexia.

Say what you will, just because I deny I have the disorder does not per se indicate that I suffer from it. People have been told they have plenty of diseases they don't actually have and have been wise enough to contradict their doctors! Schizophrenia is a case in point: how many times especially in the past was it diagnosed in those whom we now know had syphilis or some other condition entirely? Even today Bipolar and Schizophrenia can be confused and as writer Debbie S Finn describes in the her article, The Lumber Room: Mental Illness in the House of Medicine, the shorter version of which is in the Yale Journal for Humanities in Medicine: http://www.med.yale.edu/intmed/hummed/yjhm/essays/dfinn20070225.htm many medical diseases were first thought to be so-called mental or nervous disorders until some intrepid or insightful researcher/clinician looked into it a little further. Check out the article, by the way. It's all about the DSM and its beginnings and is really fascinating. If you are interested, she might be willing to send you the unabridged version.

But back to my subject: I have culled some information about what I'll call "true anorexia" and "anorexia nervosa" for now, though it is the latter, anorexia nervosa, that most think of when they hear the word anorexia. It was not always the case. Time was when an attending physician said a person, be it man or woman had anorexia and the residents standing around understood him to mean -- but wait, I'll let the information speak for itself.

Now, "nervosa" means just what it looks like it means: nervous, or pertaining to the nerves, ie the mind. So anorexia nervosa is nervous loss of appetite or a loss of appetite because of something going on in the mind. In fact, the name is not in fact very accurate; as a misnomer it misstates something essential: anorexics have an appetite, they ARE hungry, they just hide the fact because if they admit they are hungry, someone might ask them to eat something, which they steadfastly refuse to do. So those with anorexia nervosa don't have true anorexia at all, which is very confusing I'm sure. Note that I am NOT hungry but that I do eat when I am hungry. I am actually happy when I feel hungry, because it means something is working right. Unlike "anorexics" I do not enjoy the feeling of emptiness or the sensation of hunger pangs, nor do I feel it is purer and more ethereal, ie better to starve.

But here are some more data. This is what we've established:

Anorexia is a noun meaning:

1. Loss of appetite, especially as a result of disease.
2. Anorexia nervosa.

Anorexia nervosa is defined as:

Refusal to maintain body weight at or above a minimally normal weight for age and height (e.g., weight loss leading to maintenance of body weight less than 85% of that expected)

Now I looked up the proper weight for someone 5'3" with a small frame (I measured mine according to their instructions) and the range was 103-127, with the advice being that those with a small frame stay towards the lower end of their range, the middle framers stay near the middle and the large framed people stay near the high end of their range. So I should weigh at least 103 to not be underweight. According to this website at any rate. So I am 10 pounds underweight, or 91% of normal body weight below where I should be, which is nowhere near the UNDER 85% that is the point where anorexia is thought of. And I do not refuse to maintain my weight, I just keep forgetting to eat because I don't have the proper signals and because I don't want to eat when I don't feel hungry. It is simply too difficult.

However, I can be scared into eating: when I read that the heart muscle can be affected, atrophying just like any other muscle, and fail if weight loss continues, I thought about what I had eaten today and at 7pm realized I hadn't eaten a thing. I hadn't felt hungry, I'd awakened late and I simply got busy and never even drank the coffee with cream that I made for myself. But then Ana, the pm nurse, came and said something about "You don't want to have any cardiac events, do you?" and that really scared me (though I think now that I probably once asked her to say that to me if ever I didn't eat all day and was losing weight). So I made myself a large bowl of soynuts cereal, the kind Paula recommended as being so full of protein, mixed with Fiber One, one of my favorite whole grain cereals, and raisins and a handful of gorp, which is a mix of all sorts of nuts and seeds and chopped dried fruits. On top of all this I poured yogurt and stirred it together - and ate it all. So there all of you!

* Self-imposed food intake restrictions, often hidden - I eat anything, just small amounts because I am not very hungry.

* Absence of menstruation - Sorry but I'm 54, that's allowed 8D

* Skeletal muscle atrophy - dunno, but my butt went flat when I was fat

* Loss of fatty tissue - duh

* Low blood pressure - it has always been low, 100/70 or so. Sometimes 90/60 even when I weighed 115.

* Dental cavities may be present with self-induced vomiting - only because I don't brush. But my last check-up was perfect (I use that rubber tipped tool). The hygienist said she wouldn't see cleaner teeth, less tartar that day.

* Blotchy or yellow skin - Not that I know of

* Depression may be present in addition to the eating disorder - no
depression at all

* Most individuals with anorexia nervosa refuse to recognize that they have an eating disorder (denial) - As I wrote in the beginning, I'm damned whatever I say. This is a ridiculous "symptom"

Here's an even longer list, which "fits" me even less.

Anorexia/Bulimia

1. Dramatic weight loss in a relatively short period of time. - No, it took a long time 2 years in fact. But in fact the weight gain was more rapid, maybe 40 pounds in a couple of months. Then when the dose was increased another thirty pounds in about 3 weeks.

2. Wearing big or baggy clothes or dressing in layers to hide body shape and/or weight loss. - actually I dress quite nicely these days, fitted jeans and cords and wool pants, three quarter length sleeves my preference due to scars but I will wear longer short-sleeves. I even wear a skirt occasionally! Layers are only for the winter, when going outside or to keep warm in.

3. Obsession with weight and complaining of weight problems (even if "average" weight or thin). - actually I don't feel fat or feel I look fat at all. I feel I look too thin, and am embarrassed by it, ashamed of it, self-conscious of it.

4. Obsession with calories and fat content of foods.- I don't count them

5. Obsession with continuous exercise. - haven't exercised at all in too many years. That's a bigger problem.

6. Frequent trips to the bathroom immediately following meals (sometimes accompanied with water running in the bathroom for a long period of time to hide the sound of vomiting). - No

7. Visible food restriction and self-starvation.- what do you mean visible? I eat when I'm hungry!

10. Isolation. Fear of eating around and with others. - I don't care to eat with others, but I never did, even when I took Zyprexa and overate. I've always been an alone eater...mostly because I like to eat when hungry, not wait for strict mealtimes

11. Unusual Food rituals such as shifting the food around on the plate to look eaten; cutting food into tiny pieces; making sure the fork avoids contact with the lips (using teeth to scrap food off the fork or spoon); chewing food and spitting it out, but not swallowing; dropping food into napkin on lap to later throw away. - None

12. Hiding food in strange places (closets, cabinets, suitcases, under the bed) to avoid eating (Anorexia) or to eat at a later time (Bulimia). - nope

15. Keeping a "food diary" or lists that consists of food and/or behaviors (ie., purging, restricting, calories consumed, exercise, etc.) - Dr O had me keep a log, but I stopped doing it, once it put too much emphasis on what I was eating...

16. Pre-occupied thoughts of food, weight and cooking. - don't even think about it, except when worrying about Joe's ability to eat.

20. Hair loss. Pale or "grey" appearance to the skin. Not that I know of.

21. Dizziness and headaches. - I suffer from migraines, a lot fewer now than ever (menopause did it I think)

22. Frequent soar throats and/or swollen glands. - Never

23. Low self-esteem. Feeling worthless. Often putting themself down and complaining of being "too stupid" or "too fat" and saying they don't matter. Need for acceptance and approval from others. - I do have low self-esteem and feel evil and worthless, yes, though NOT too fat, no, that I am not guilty of.

24. Complaints of often feeling cold.- Sorry, I'm as often too hot as too cold.

25. Low blood pressure. - as mentioned above

26. Loss of menstrual cycle.

27. Constipation or incontinence. - not at all

28. Bruised or calluses knuckles; bloodshot or bleeding in the eyes; light bruising under the eyes and on the cheeks. - Nope

29. Perfectionistic personality. - I dunno, but I think I settle for less than perfect ALL the time. If I were perfectionistic I would not let these entries go unproofread the way I often do, for instance.

30. Loss of sexual desire or promiscuous relations. - never had either 8D

31. Mood swings. Depression. Fatigue.- yes, I am tired, and I know I would be less so if I ate more, that I'll grant and did so in the last entry.

32. Insomnia. Poor sleeping habits - I sleep like a LOG...I mean, I could roll out of bed and stay asleep! (that's the Xyrem for you.)

So I put it to you once again, is this the picture of someone who conforms to the criteria for the diagnosis you guys have given me? I think not. I KNOW not. I rest my case. (And I refuse to proofread this...)

Posted by pamwagg at March 5, 2007 07:40 PM

Comments

Pam darling,
I admit defeat. Your exhaustive list of the criteria for a true diagnosis of Anorexia Nervosa clearly indicates that you do not have this disease. I still maintain, however, that "anorexia" is a mindset more than a true disease, and it is as unique as the person who thinks in the various, myriad manifestations of this rather perfectionist outlook. I once suggested that you find a new windmill at which to tilt. Frankly, since you eat when you are hungry, are not in physical distress, danger,nor do you consider yourself in any way different than anyone else except for your concern about your lack of appetite, your case has been made and accepted(by me, anyway). This is a matter which should be discussed and hopefully addressed successfully by your physician. Frankly, Pammy, I don't want to sound officious, but perhaps you have put the wraps on this subject, and there really is no reason to write about it any further. We who love you cannot give you a bigger appetite, nor has anything we have said had any effect on your well researched argument
that you are not anorexic. Please try to remember that food is necessary to life, and give your body enough to carry on with your amazing grace.(I must admit I was flattered that you like "my nutlettes"(tasteless as they may be).They are packed with nuitrtion in a very small serving. Eat, drink, and be merry, my T1. One day we will do all three together! Much love, T3

Having suffered from an eating disorder for years and having spent a considerable amount of time in an inpatient eating disorder facility, my "professional" opinion is that no, you do not have anorexia. But, I think you're missing the forest for the trees, here (to use a bad expression). The label assigned to what you're experiencing is not nearly as important as just making sure you're healthy. So, I think you do need to focus on eating regularly and healthily (is that a word?), but I don't think you need to get all caught up in thinking you have some eating disorder.